Saturday, February 28, 2009

Sadness Falls

Poochie Poo had to be put down.
R.I.P. Pooch!
Mar. 1 2008- Feb. 28 2009

Ill post some of his pictures when blogger decides to act right

xox

Friday, February 27, 2009

Now Im spilling

We got our foster kid!!!!!!!!!!!!!!!!!!
And so far hes wonderful =)

I totally cheated and told G and J lastnight..cut me some slack J was in the hospital so I needed to cheer them up with my special surprise =)

Nobody guessed it exactly even though Christy and Somer gave it some great effort so how about..EVERY ONE of my followers gets 50 points and Christy and Somer get 100 for participating lol be excited!!

Anywho..M is good hes actually teaching J how to play the ps3..His o2 has been good today and he was full of energy and even lasted all 3 hours of his karate class!!

Poochie has a vet appt. in the am and we will know if were gonna have to put him down =( or not =) so keep your fingers crossed and Ill update later.

xox

Thursday, February 26, 2009

Good Blowing

Yay!! Today went well!
His pft's were actually the exact same BUT his x ray from today held up to his x ray from last week showed a whole section of lung that was filling with air and last week that whole section was blocked off with mucus and inflammed to the point of being "usless".. It was AMAZING.. I have never seen that so it was super cool to me.. Normally I just know if the x ray looks good or bad and if the pft numbers are ok, good, bad or whatever.
His 6 min. walk was good.. Last week his o2 went from 89 to 92 and today it went from 93 to 97!! Thank you all for your awesome prayers =)

Even though the apt. for M was good my ♥ hurt so bad for this family in there.. They were not american and knew very little english, they brought in a baby ( Im guessing like 6 months or so ) and she was on the vent and in a stroller and the mom just looked so tired and they were scared and upset so that was relly sad but then... We were in the room waiting on Sindel to come back in and I heard the nurse telling the family that they were going to have to go to the hospital and the lady was not understanding and just kept wanting to know why the hospital and the nurse tried every way possible to explain and so anyway someone ended up telling the family the little girl was dying. It was awful and I thought it was so tacky to just tell her that when it was odvious she was upset and confused already.. yea so theres my sad story.
=(

Poochie Poo actually played with a fly that got inside today.. He only swatted at it 3 or 4 times and had to lay down panting but hey atleats he played!! Thats the 1st time in almost 2 weeks he has played or even acted intrested in ANYTHING.. no cat nip.. no temptations.. no tuna and he has not even wanted to play with the laser so now you see why Im so excited over that stupid nasty fly lol.

Ok so now...
Im excited!! We have good news BUT I cant spill yet.. soon I will be able to tell all ;)
I will however give you 3 hints
1. We have waited over 8 months for this
2. I have only blogged about it 2 or 3 times
3. I will STILL be the only female in the house
Any guesses?? Ill give 50 Kellee points to the 1st to get it right?!? Be excited =D

Anyway off to do my nightly duties as a CF wifey =)
Oh and Graciy if you read this Ill text you in a bit my phone went dead sorry.

xox

Wednesday, February 25, 2009

Thanks new friends from SITS




Tomorrow is "the" day.. Pray all goes well.
M's o2 has been down today =( I think the highest we got was a 94 boo.
BUT I just know tomorrow is going to be good! I have all of you guys praying for us ( which I am so very thankful for ). Anywho we are praying he can do the 6 min. walk with the pulse ox on and he will stay higher than 95 pray pray pray!!! He feels good CF wise but hes still very anti~oxygen and down in spirits.. I did however convince him to try on the new crest white strips

Needless to say that wont happen again =) It was quite entertaining tho

So I already had like the greatest followers ever and then I found the SITS blog and joined and now wow!! Those girls are AMAZING..Im still not real sure how the whole thing works but Im learning so be patient =)

Pooch News



Poor Poochie Poo is still quite terrible...He now has stopped grooming himself along with not eating or drinking..He did however jump up on the bench today for his nap which he has not done in a week or so..maby just maby hes gonna bounce back =/ Im sure not ready to put him down!
Anyway just a quick little post and now Im off to laundry, dinner and treatments.
xox


Tuesday, February 24, 2009

Grrrr

O2 stats back to 92, Blog Buddies Josh & Graciy are in the hospital and Pooch is sick sick sick...

Going to CF doctor on Thursday to find out if M has to have oxygen (if o2 stats are 95 or lower) and taking Poo back to the vet on Saturday.

M is very very very angry/upset about this whole oxygen thing so please please lift him up in your prayers.
Please also pray thay J has a speedy recovery and G is able to stay positive =)

The vet reccomends we put Pooch down if hes no better by saturday so keep your fingers crossed!

Blah blog I know just kinda bummmed...

xox

Monday, February 23, 2009

Its Michael

Michael here doing some Michael facts since Kellee asked me to 5 days ago.

1. Names Michael
2. 24
3. Born in Cleveland OH
4. Adopted and raised in Mobile AL
5. Diagnosed with CF at 4 months
6. I have a CF free twin sister
7. Im the biggest ghostbusters fan ever
8. Kellee is a big part of me being as healthy as I am
9. I drive a Delorean back to the future style
10. I know every song from the 50's to the 80's thanks to my mom
11. Heres my medicine list
Zithromax 500 mg. M-W-F
Lexapro 10mg BID
Plaquin 500mg BID
Naproxen 500mg BID
Sulfasalazine 500mg BID
Previcid 30mg in the A.M.
Enalipril 2.5
Uniphyl 500mg at night
Vitamin E
ADEK
Pancrease MT16 10 with meals 7 with snacks
Humalog 1 unit per 10 carbs so really ALOT
Lantus 37 units at night
Albuterol TID
Pulmozyme BID
7% TID
Advair 2 puffs BID

12. Kellee makes me do the vest and I hate it. I like manual cpt and she does it but still makes me do the vest. grrr
13. I wear it 3 times a day for 30-40 mins.
14. I only drink fat free milk and water
15. My parents took prime care of me and got me where I am today.
16. 15 years of Karate has helped me stay alive.
17. Im a movie guru and even watch chick flicks.
18. I was my CF doctors very 1st patient. I met him when he was a resident doctor driving a clunker car. He now owns a boat, a BMW and a island thanks to me. Haha.
19. I hav had 10 sinuse surgeries. The 10th was insane. The cut open my forehead and removed a piece of skull so they could make a "drain hole"
20. I work the sound system at my church.
21. Im a Taurus and yes Im very stubborn just ask Kel
22. I build movie props.
23. I have crazy curly hair and if I dont keep it short it grows into a fro.
24. I just stated 24 facts about me.

Ok so here you have some facts to go behind this incredible M person Kel bloggs about way to much.

Slacker!

Yep thats me...slacking!
We have been very un busy yet I still havent blogged.. boo for me.

1st I MUST say my followers are the greatest!! Thank you all for the sweet comments reguarding "Nasty comment lady" Im glad Im not the only one that feels lying about CF is one of the most un heard of awful things EVER!
Can you imagine the KARMA thats would come back from that 1?!?!? geeze

So I am very very happy to say M's o2 hit 97!!!! Thanks for thr prayers..please keep them up!
We went outside and got some good exercise yesterday and it really seemed to help with M's energy! He even felt well enough to skate, sing to the top if his lungs " under the boardwalk" , have dinner with Cream, help me put shelves up in the utility room and convince our waitress he was a "real" ghostbuster and went around eliminating Mobiles ghost problems with a "real" proton pack!! Yep that my M and hes odviously feeling better!

So I know Ive been telling most of you I was going to show you guys the inside of the new house BUT I really need you to understand that I am way way way OCD and really cant function unless everythings "right" so let me get all my pictures up and my utility room stocked and then I PROMISE I will give you a tour. =)

Pooch news
It seems like most of you guys worry about Poo just as much as M lol! Thanks =)
Poo's not so good..He goes back to the doctor on Tuesday (tomorrow) and Im kinda scared. We ahve been giving him all his meds and he seemed a little better for a day but now he actually seems worse.. He just lays around and pants all day =(.. Hopefully we will know something tomorrow and it will be good =)

Anyway on to clean and boil nebs!
xoxo

Friday, February 20, 2009

No good Friday



Ahhh I just typed this whole blog and my computer shut down!!!
Ok so everything was going good today until I checked my blog and saw the "Nasty blog comment lady" she calls herself "Amanda Smith" anyway she tells me I part of a "pepe saga" and I should stop it... Yea I was Pretty lost at this point... Anyway she tells me how I should not tell you guys things that I copy from the internet about a port.. I try to e mail her to sort this out but ( shocker here ) she dont have a profile or a e mail address or even a blog.. ( draw conclusion here ) so laa dee daa I continue with my day after posting explaining myself to you guys about my information and opinions.. We go to the doctor and find out M's FEV1 is bad ( 2.05 ) but better than 2 weeks ago.. We also learn more about the o2 stats being low.. Conclusion is iv's for another week and 6 days wort of exercise to pull the stats up or.. OXYGEN.. Im sure some of you are thinking oh ok well thats alright... WRONG in M's mind getting oxygen at 24 means hes fixing to die.. Dr. Sindel and I explanined thats not the case but hes not hearing of it..
The whole time I have known M I have not 1 time seen him upset due to CF.. Until today.. With his upsetness also came a bit of "giving up".
Please pray this passes soon and he will over come this.
So we come home start pm meds,
dinner and I log on to blogger... Here I find several comments and e mails letting me know that "Amanda Smith" has contacted my followers and that they are sorry shes being nasty to me.. One blogger buddy (AMY) told me I could read about the "pepe saga" on here blog ( until this point I didnt know it really existed ) so I find it and read, look it up and read some more...WOW wow wow wow.
Im so sad anyone could/would do something like this..
Im sad the world has people like that
Im sad anyone thinks I could do something like that.

So with that being said I MUST MUST MUST say
I am real.. Im really Kellee and the love of my life REALLY has CF.
I wish it was fake.. I wish it was fake everytime he coughed up blood, spit out green and brown stuff, couldnt breath, lost a friend before they turned 25, had to take 50+ pills in a day, had low pft's, worried about insurance, couldnt participate in certian things, got CFRD, had to check his sugar, went to ICU, coded, couldnt move due to RA, needed oxygen, worried about food intake, sat on the toilet for an hour, had 10 sinus surgeries and more than ANYTHING I wish it was fake when he had his own funeral planned at 16.
But its not..its not fake at all..its my life and I love it.. I embrace it and I learn from it.
How could I not?? Hes my ♥

I WILL NOT defend myself from this nasty comment lady named "Amanda" anymore.. I WILL however pray for her.. I will pray that she finds happiness within herself.. I will pray that she finds something more productive to do with her time (idea.. raise awarness for something like cf rather than a blog she "wonders" about) I pray that she not feel the need to drag not just me but anyone down with her self misery and last but not least I pray that while shes visiting blogs and downing me she finds a link to donate for a cure =)




Alright guys Im off to make M eat "real" food... He seems to think this qualifies







Hey atleast hes happy about something today!!

Oh and for Pooch.. well hes just Pooch..

Hes taking his cancer meds ( with much fuss ) and seems to be a tiny tiny bit better!


I swear every picture I post of him on here is a dif. one but you would never know it!!!
xoxo




















































Let me just say

Apparently this nasty comment blogger person dont like that I background check any and everything I post about CF that I out right have not up close and personal exp. first hand.
Let me just re state ( since I have already said in a previous post )
If you ask me a question I will answer to the best of MY ability.
If I do not know I will
A. Ask M if he knows
B. Ask Dr.Sindel ( CF Doctor )
C. Tell you the little I know
D. Tell you I dont know

Forgive me for not saying this sooner

******* If I can find a site that says what I need to say just in "proper" form then thats the version I will give you.. Example : Kellees verison on "general info on cleaning and taking care of the port"
Make sure the area is clean..clean the port site..make sure you have the right needle..mess with it as little as possibe..keep air out of the line..blah blah blah
Then there is the long drawn out post that says all the same stuff just in detail and verbatum, sometimes its directly off papers that the home health place gives me sometimes its a website and then sometime I can find exactly what i need in proper form and that when you get Kellee version ( hence me describing the "white thing with a green knob" and "clamp thing" in the pics. for the port post*******.


I absoloutly do look up everything even if I already know the answer I like to make sure my answer is generally the same as clinical studies, proven facts, per cf patients or from a doctor.

No where in this blog do I say " Hi Im Kellee a cf expert and everything I say is right from my brain and its always correct"
I do however tell you my OPINION and as much as I can when you ask me a direct ?
I do NOT advise you to do something health wise "Because Kellee said it was a good idea in her blog"

If you do not want my opinion or shared info. then perhaps you shouldnt be reading my blog.

For the rest if you thanks for the awesome comments I ♥ U Guys!!

xoxo

Thursday, February 19, 2009

Sooo

I havent been blogging long but Christy ( wonderful blogger lady ) had the idea to do a quick catch up so heres mine/Michaels.

The names Kellee (Michael)
♥ Belongs to Michael, a 24 y/o CF patient
I love with my whole heart.. not half
We have a cancer cat named Pooch and a un trainable puppy named Titus
Just bought our 1st house
Children of God
Destin to find a cure and raise awarness
and last but not least VERY much in LOVE =)

This blog is nothing more than our memories our ups and our downs.
We are here to meet wonderful people, learn as much as we can and share what we know.
If you want our whole in detail story you can look in the Jan. 2009 tab. Our 1st post is allllll about us =)

Happy reading
xoxo

Posted 2 soon

Guess I spoke to soon

Dropping back down around 90.. Bouncing from 90-93 just sitting =( Getting winded just walking around the house.
Going to see Dr. Sindel tomorrow at 3.
Say an extra prayer =)

xoxo

Nervous Breakdown...

Hey!
So after I finally did breakdown and post my ? about the o2 stats, looked it up on the internet and talked to a few other cfers I had a breakdown.. Theses a few and far between but it was long over due... Of course I tried very hard to hide the "upsetness" from M but he saw right through it... Even when he stared pickin I held it together UNTIL he let a bit of "scaredness" on his part show. When he stopped playing is game and sincerly looked up and said "Im not ready for this" I lost it... Yep woo all that holding back... gone.. right at the window.

Tears and Anger later I put back on my Cf resistant armor and finished up his night time meds.
I then started checking his o2 stats every hour on the hour.. on his fingers and his toe ( laugh it up Im a spaz and I know this ) I heard that sometimes its lower on your fingers if they are cold.. They were cold hince the toe =)
So anyway from 11 lastnight to 12:37 right now his o2 stats have not been below 94.. Now I know thats still not great but it sure as heck beats 90!!
Id be wiling to bet it has something to do with my super hard praying and all the prayers for you guys =)

So since this has happend last night called for a game that M & I play..
We call it the Nasty/Positive game and we play it whenever we "need" it.
We find it fun, good therapy.

You should try it..
Heres the rules.
1. make a list ( dont matter how short or long ) of everything you are upset with, mad at or just down right hate.
2. AFTER you make that complete list you have to go back and for every neg. you MUST list 2 pos. about the same thing.

Heres mine from lastnight
Neg.
1. I really hate CF
2. I really hate low o2 stats
3. I really hate that poo has cancer
4. I really hate that Mrs. Anna has been gone 3 months

Pos.
1. We have met awesome people b/c of CF & CF has made our love stronger
2. Its not low to the point of harming the body & Its been high for 24 years
3. We caught it early & Its not harmful to M like we thought
4. Thats 3 months shes been haunting/harassing scientist to find a cure & Shes with her mom & dad.

Its just a goofy little thing we do that makes us realize things are not as bad as they could be or seem.

Please keep the prayers flowing
xoxo

Wednesday, February 18, 2009

Can anyone answer?

Alright guys I have tried and tried to put this off for as long as possible.. but now I need to know.
Michaels o2 stats are lower than normal ( for him ) and have been for 2 weeks now.. Like I said I guess you could throw out that "denial" word but Ive really made myself believe they would come back up..
They are hovering around 90.. Normally his is 97-98
Hes been on iv's for 1 week now and they are still that low.
Is it oxygen time?
Can we bring them back up?
If so how?

Sorry Im sure this is very scatter brained but Im just scared and lookin for answers as quick as possible.
Thanks in advance.

K

A must!

You really should check out this blog
http://www.agdprayerblog.blogspot.com/

xoxo

Tag Im It

At the request of my love, Sara....

O.k. so the rules are...once you have been tagged you have to post a blog with 20 weird things/habits about yourself.
At the end of the blog, you must list the names of the 6 people that you are tagging.


Probably the WEIRDEST thing about me is that I have a "bend" phobia-- I know, weird, huh?!
I dont like anything or anyone to touch any bend in my body ( behind the knees, inside of the elbow etc..)

I am a child of God

My heart belongs to the one and only Michael Perkins

Im very much addicted to softlips chap stick

I absolutely LOVE to belt out songs in my car while I'm driving, so when a car passes me, I keep singing but I put my cell phone up to my ear so it just looks like I'm talking on the phone!! Ha ha ha!!

I really get grumpy if I get hot or my hair frizzes up.

I really enjoying cleaning my house

I am more than likely the most compassionate person you will ever meet.

I have a awful smell complex.. My uncle Jason called me smelly Kellee the garbage pail kid when I was little and it really gave me a complex! I dont go anywhere with out smell good stuff on, in my purse, car etc...

Im very logical, ditzy and romantic

Im more of a saver than a spender

Some of the people that know me best tell me Im the real life "Mary Poppins"

I am always the last to figure out whats so funny =)

I have more medical knowledge in my brain than most people think

I google everything

Michael and my brohter Caleb are truly my BEST FRIENDS

Nothing makes me happier than M feeling good and my house being clean and smelling good

I still get nervous when we got to Dr. Sindels office and I dont want to go to the hosp.

Im a planner.. The events of my day are always planned however with a cf most plans go out the window

Outback and jolly ranchers can always make me feel better

Tuesday, February 17, 2009

Port part 3/Comment Answers

Ok so since I have quite a few of you asking Im going to make a post answering all the questions that you all asked that way everyone can see everybodys questions and learn even more =) If I do not know the answer I will
1. Ask M
2. Ask Dr. Sindel (yes we talk through e mail daily lol)
3. Tell you I dont know. I will NEVER tell you something I dont personally know or have not been told by someone trustworty and cf smart.

This is a long post but you asked so I answered =)

1. Did it hurt getting the port put in?

Michael says no, he said its was much less painful than getting stuck in the arm or having a PICC line put in. He has had 2 and does not remember the 1st 1 but says the 2nd did not hurt at all.

2 other cfers agree it did not hurt esp. compared to sinus surgery and other cf procedures.
I asked them to rate the pain on a scale of 1-10.. 1 being the least amout of pain and 10 being the most.

Michael- gave the surgery its self a 2 but he said getting stuck the first 3 times after surgery was a 4.

CFer 2- surgery was a 1.. getting stuck was a 3

CFer 3- surgery was a 2 getting stuck was a 4

2. Is that a scar I see where they put the port in?

Yes. 1st port the scar was much much smaller but when they take out a port they have to make a larger cut leaving a larger scar. Some of our cf friends have much smaller scars and some have larger scars..guess it depends on how good your doctor is.

3. Why do a port in that spot?

The intravascular device in inserted in a vein (usually the jugular vein or subclavian vein) and tunneled under the skin of the chest wall. There, a small device is inserted and connected to the venous line.
If you dont not have a preference thats where they reccommend it. In this spot (upper chest) they are able to run the line under the collar bone and in to a main vein. You can pretty much have it where ever you want it as long as it can run into a good vein.
Alot of our female cf friends get them put much higher or in the side below the bra area. They say it dont get in the way of the ladies and they can cover it in a bathing suite.

3.a Is there a certain reason why they don't do the iv in the arm?

You can do it in the arm but theres a line that runs off of the port and into a vein (how the med gets in) and if you put it in your arm that line is just under the skin.. making it visible (and sometimes tender per cf patient)

4. Does it hurt when the needle goes in or comes out?

M says the first few times he got stuck it hurt ( level 4 on our scale) but it has never hurt coming out.
When you get accessed your nurse or doctor will give you some stuff called "Emla Cream" and you take that and rub it on and around the skin where your port is. Its just like a lotion but it numbs the skin so you dont feel the stick at all. All of the cfers we know dont even use the cream b/c they all say that they dont feel getting stuck. According to Dr. Sindel after you get stuck a few times the skin becomes dead directly over the port which is why it dont hurt.


5. Can you take a picture of the whole thing, the whole IV line and what it is hooked up to?

I will put these pics at the bottom of the entry =)


6. How often do you need the IV? Only when he is sick or every so often?

Only when theres a infection in the lungs/whatever organ that cant be cured with oral antibiotics.

7. Why did he have to get it at such a young age?

When M was little he was very very very sick and was in the hosp. 8-10 a year and his mom said he was getting poked so much that all the veins were rolling.. including the ones in his feet and the top of his head. She told me it got to the point where they would have to tie him to the bed to try and poke him =( so Sindel thought a port would be much easier.


8. How do they do the surgery?

All I know about this is what the doctor told me when he had the 2nd one put in.. so heres the little I know.
Its usually performed under sedation or general anesthetic, it takes about a hour and its out patient. Sorry for the lack of knowledge here


9. Is it hard to care for? and what are the rules for maintaing and caring for it?

Well it depends really Ill do a break down of the different care for it.
Regular everyday care is simple.. when you are not accessed theres no care or special need for anything EXCEPT you should get it flushed monthly to keep the vein open and blood flowing. If you dont flush it on a semi regular basis blood can clot in the line. We personally go with monthly but some cfers do it every 3 months.

When you get it flushed you can either
A. go to a home health place, the access you and push a vile of saline through followed by heaprin or
B. You can do the same steps at home yourself.
General rules and care care is a bit more detailed.
1. Always use aseptic technique when handling the port, giving medication or taking blood samples.

2. Only access the port when strictly necessary for treatment - the less the line is handled, the less there is an infection risk.

3. Only use the correct access needles. Each cfer has a preference M's is a 3/4 inch gripper.

4.Never access the port unless you have been shown how.

5. Always flush with saline in between (SASH: saline, administer medication, saline, heparin).

6.Always use a 10ml or larger syringe - smaller syringes exert high pressures and risk damaging the line. Do not exceed a pressure of 40 psi.


Accessing care/rules... This is directly off a sheet from the home health place trying to get me to access him
1. Always access the port at an angle of 90 degrees to the septum.
2. Insert the needle steadily until you feel the bottom of the port.
3. Avoid excessive pressure on the needle once it has reached the bottom of the port.
4. Needle length - should be long enough to reach the bottom of the port when inserted. When using the GRIPPER needle or the winged infusion set, the needle hub should be flush against the skin surface.


10.Can you have blood work done from your port?

Yes/Kinda
Certain test can not be pulled if you are having iv's run in due to the iv meds giving a false reading. This has only been the case 2 times with M and they were both test to see how thick his blood was for a sinus surgery ( some of his meds thin his blood and have to be stopped before a major surgery )


11. How do you draw blood for a port?

I personally have not ever drawn blood from his port but I know a little from watching and asking 324321 questions that you have to
1. Withdraw at least 5mls of blood and discard. then draw the desired amount of blood for whatever..
2. Immediately flush the system with 20mls of 0.9% saline.
3. then push in 5mls of heparin.

12. What kind of complications can you have?

These are the only ones I know of...There is more Im sure but like I said these are just the ones I know about.. Michael has not had any of these and only 2 out of the 15-20 we know have had any trouble.
1. Port becomes old and stops returning blood. A good taken care of port can last 10-13 years.
2. Port can be damaged in a injury ( sport )
3. Pneumothorax
4. Catheter/line disconnection

13. How often do you change the needle and tape?

Needles should be changed every 7 days. However, there is some that say it is safe to leave needles in for 2 weeks without changing although any studies you look up will tell you this resulted in a significantly higher incidence of port infections.
change the dressing whenever it is soiled, damp or loose.

14. Why is a port a good idea?

Well for M & I we like it because fewer pokes can mean fewer breaks in the
skin for germs to enter, so less chance of infection. It also gives M freedom to do alot of stuff at home and M says there is no pain unlike picc lines and regular iv access.


15. Can you see it when its not accessed?

You just see a small lump, like a bottle cap under the skin.
However the smaller you are ( thin not age ) and where you have it placed may make it more/less noticable.

16. What are all the parts in a port made of, called how do they go in and what do they do?

Again this is just a little I know and Im sure theres more to it..
The main part of the Port-a-Cath is called theport or reservoir. It may be made of stainless
steel, titanium, or plastic. The surgeon puts it in, under the skin.
The port is connected to a tube (catheter)then the surgeon threads this tube through a large vein ( A large vein can handle medicines and fluids which may bother a small vein.)


17. Can you do everything normal when it has a needle in it?

Pretty much within reason. We dont stop our daily things but we are careful when M is accessed. He dont go to karate or play football but he still goes out and works on his car and stuff like that.

The only thing I know that you for sure CAN NOT do while you are accessed is get the area wet. You can shower and stuff as long as you have tegaderm over it but you are not suppost to submerge the site into water if its uncovered. Pretty much keep the tegaderm on and sealed tight.. dont do anything that could rip the line out ( rough housing/contact sports) and go on about your day.


18. How do you de access?

EKKK Like I said before I can and have done this but I dont like to.
Anyway the proper steps to de accessing are
1. Anchor port between two fingers.
2.Pull needle straight out and apply pressure with a gauze if it bleeds (m's dont bleed nor do any of the other cfers I know).
3.Dispose of needle.


Michael just so happens to be getting an iv right now so heres some pics.
I know some of the captions were un necessary but Im ocd and detailed so smile and keep reading =P


The Beginning.. Hanging the iv




Down the line.. The little white thing is the piece used for controlling the rate of the med. it has a knob that you slide up to make it go faster and down to go slower.

line...


More down the line. The 1st white piece is a "clamp" you use it to cut off flow of the meds if you need to cut it off in a hurry.
The second white circle is a "dialaflow" its does the same thing as the pice with the knob.. you dont get dialaflows unless you out right ask for them. They make home iv's easier b/c with the dialaflow you set the rate (example lets say M has a bag of meds thats 100 ml I could set the dilaflow to 100 and that would make the med go in over the next 100 mins.) Normally it tells you how fast it should go in. With the piece with a knob you just kinda guess on the speed of the drip ( called gravity hanging ) Its always better to be safe and ask for a dilaflow b/c you dont ever want to let the meds go in to fast and burn the vein.

The full picture =)

Hope this was helpful!! Let me know if you have any more ?'s and I will try my best!

xoxo

Port, Pooch and 2 Flowers

Hello my fellow bloggers.

This is part 2 of the port post that I started for Graciy & Josh however several other people have since asked me about it and left some comments so...
A home health nurse came by today to re access M. You have to get the needle changed ( called re accessing ) every 7 days ( Well you dont have to if you want a port infection. You wouldnt do a aerosol with a moldy nebulizer so lets not do iv's with an old needle.) so I took pictures of M's chest with the needle out just for Graciy & Josh to know its not a 3rd nipple lol ;) and I also took pictures of the re accessing so you can see up close how it works. Most cf moms and wifes/husbands can and do re access, I however DO NOT because I am terrified Im going to stab the wrong spot! Everyone keeps telling me thats pretty impossible but Im still a chicken ( leave me alone! I do all the other cf stuff ) Well I dont take the needle out either lol =P. When you take the needle out its just like pulling a thumb tack out of a cork board.. I did it a few times and I can do it I just dont like to. I always think it hurts even tho M dont flinch and swears he dont feel a thing.. idk just dont like doing those 2 things ( I am capable of doing them and have before, they are both quite simple its just a personal preference )

Anyway these pictures are not entertaining or anything fun they are just for learning and info. for the ones of you who asked about it.

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Needle out ( de accessed )

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Up close needle.

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Bald spot!! He always shaves that little part when he gets accessed.. for some reason he dont like the tape ripping out his hairs..hmmm??

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Nurse getting ready.

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Michael ready.

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Priming/Flushing the line ( pushing saline in it )

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Coat 1 of Betadine

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Coat 2

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Swabbing off with an alcohol stick.

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As clean as possible.

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Finding the port with her fingers.

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Sticking in the needle ( accessing )

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All the way in

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Double check make sure its in and secure.

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Flush and make sure it goes in the vein.

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Flush with one complete thing of saline.

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You pull back after you have flushed to make sure you get a "blood return".

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When you see this you know you have successfully accessed or re accessed a port meaning you are in the right spot ( center of port ) and iv's will go directly in to the vein that the port line runs to.

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Push blood and saline back in.

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All the way.

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Accessed and almost done

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Quickly apply tegaderm.

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Seal off the site.. Keep germs away!!

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Accessed and ready to go.

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Michael thought it would be funny to give the nurse a hard time since it was her 1st time meeting him and he acted like she really hurt him when she poked him.. she was like oh my I so sorry then he started laughing so when she was done she squirted him in the face with a new thing of saline!! Quite funny!! so here he is getting the saline off his face =)

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Classic Michael! He swears his "boobie tassel" is what won me over.




Oh and update on Pooch.. Hes groggy ( yea more so than normal ) and he just may have to go live somewhere else ( Michael dont know yet eeekkk ) I have found out quite a bit about this cat cancer/aids and according to a few people ( vet and doctor oh yea and google ) it could cause some major problems for M. So... Michaels gonna be pretty upset but this is just 1 of those things that cant be helped =(.

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Happy news!!
I have 2 beautiful flowers today instead of 1

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Off to tell M about Poo.. wish me luck =/


xox

Emergency Post =(

My poor Pooch is sick... v ery very sick.. Hes at the vet right now.
For the past few days hes been coughing like he had a hair ball so we forcefully gave him his hair ball treatment but he didnt get any better =(. This am he was standing by our front door and coughed really hard and just flopped over.. I ran and picked him up and he was just limp =( so I went to open the door to call M ( he was outside watching a guy move that awful ugly big yellow dumpster out of our yard finally ) and pooch started meowing so I just sat down with him and for those of you who know Pooch personally you know he does NOT sit with me EVER ( well if I have temptations he will ) I can pick him up and pet him but as soon as he relizes its me he runs to M.. He always has.. anyway so I put him in my lap and he just layed there.. instantly I knew something was bad wrong. M & I always do this thing where if poo jumps in my lap I take his face and go "Hey its me the female" and he always goes right to M when I say that, so i said it and he just laid there anyway as if that was not enough to alarm me his breathing was horrid!! He sounded just like a CFer when they are bleeding in their lungs ( for you non cfers it sounds like your gargling but from the lungs not just your throat and mouth ) so I called the vet and they said bring him in asap. Of course I have not had a shower yet since I have been doing M's iv's and boiling the Eflow in between 4 aersols along with my daily vacuming dusting and sweeping off my sidewalk ( I know Im so OCD but a nurse is coming to our house at 1 and I cant very well ask her to take off her shoes so I just made the sidewalk as cleas as possible lol ) blah blah back to the original story... Jason took Poo to the vet and they said alot of fluid was collected in his lungs and they are doing a bunch of test.. They think it may be feline aids or feline leukemia.. which I really dont understand how since we paid a TON of money getting all his shots including the shots to prevent feline aids and leukemia.. Anyway please pray for my poochie.....


After all that writing he just got back from the vet and he does have feline leukemia =( hes has meds to take twice a day and he hates them... Its a nightmare trying to get them down him..

xoxo

Monday, February 16, 2009

Yesterday & Today

Pretty lazy days =)

For you out there that dont know Michael is a big movie prop collector/builder and he loves loves loves ghostbusters.. well yesterday he started on his 3rd proton pack for halloween..
he put parts on and did all the stuff that Michael does with it. So between iv's, treatments, proton pack building and cooking our day was simple, lazy but busy in our Kellee Michael way =)

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He claims this is how exausting workin on the pack was LOL

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Odviously Pooch became worn out from watching us clean up and goof off.. This is how I found his sneaky self lastnight ( hes knows hes not allowed on the table ) (( He thinks just because hes on a place mat its ok )

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Today was day 2 of proton building for Michael and Re order medicine day for me. I spent 3 hours re ordering all oral meds, iv meds and home iv goodies ( new line and port caps ) and even set up an appt. for someone to come reaccess M tomorrow ( Im still to scared to do it ) I caught up all our laundry from the hospital and did my typical everyday cleaning ( dust, vacumn blah blah )

When I got up this moring I noticed one of my flowers M got me

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was opening up really pretty!! And all through the day its opened up more and more!!

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I know Im a dork Im just so excited! Its so pretty! lol

Anyway after my cleaning and flower pictures I helped Michael paint layer one on the pack =) It was messy fun! Now I get to go help him get all the paint out of his leg and arm hairs, nose and eyebrow without getting his needle wet woooo!

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I think hes done with pictures today lol

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xox

PS: Heres my flower now =)

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